benzene as a cause of mm- This is a link to an interesting article about benzene and mm. Does anyone know of sources, studies, etc that report that benzene is a definate cause of myeloma? http://www.centralchronic...

Does anyone know which hospital has the highest success rate in long term remissions and treating myeloma? Thanks, Tammy

I am pretty sure that the cause of myeloma is a general accumulation of toxins throughout a lifetime, UNLESS it is caused by a virus. The toxins could be radiation, chemicals, or exposure to the bad kind of EMFs.

I would never rule out a virus , as other viruses do cause cancer. I just read a headline today about this, and now I do not remember where I even saw it. I must find it.

At any rate, I have thought about this a great deal, since I was diagnosed with mm at a relatively younge age of 44.

My theories are not scientific at all, and they are all purely conjecture.

On the more general mm mailing list, one surprisingly common thread was how many people lived near airports or airfield. It could be the jet fuel or the electronic--I cannot pretend to know which. And I have lived under the flight path of a major airpot almost all of my life.

I drove a VW van for about a year while the engine smoked. The motor on that car is really inside the car, and you breathe the fumes. I do not know enough to say if that was benzene exposure or not.

I have worked around computers since they were available for personal use, and Dr. Berenson, an mm expert, has shown a correlation past chance between mm and system programmers. I would advise anyone to
use an LCD monitor (they are very cheap now) and to move the computer as far away from your feet as possible.

I have not had more pesticide exposure than anyone else, although this is another known link.

I have stripped down two old houses that both had lead paint without wearing masks, and many years ago I worked as an apartment painter, and I am about the worst and sloppiest painter you could ever meet.
I got it all over myself and use very hot water to get it off. I had
actually built up a tolerance for scalding hot water. I am sure that helped toxins to enter my system.

At one time, I drank large quantities of diet Coke or Pepsi, extremely large quantities. I used to think that the Nutrasweet/aspartame caused cancer, but I am not so sure about that anymore. There is someone whose counts go up and down with her intake of diet drinks with aspartame.

What might have been worse is I often would drink orange juice and then diet Coke or the other way around, both in large quantities. It might be possible that the sodium benzoate mixed with the Vitamin C to form benzene, as this does happen in the test tube. I am not convinced that aspartame causes cancer, as there have been a LOT of studies, admittedly most paid for by the maker of Nutrasweet, but some were not. And no link has ever been established. But the benzoate of soda is another thing.

Also, I lost a lot of weight right before I was diagnosed. From another listserv member of the main mm group, I learned that he thought he developed myeloma because he lost a lot of weight, and the toxins stored in his fat overwhelmed his system. It may have been the same for me. It could have been aspartmae or anything else. I think if we try to lose weight, we need to take a lot of vitamins or something to try to prevent this.

I was very very sick in Florida, and if a virus caused my disease, I am sure I got it on the airplane ride to there.

We had an old house with terrible carpet and cats, and I do not think that the combination was too good to breathe. We had a Honeywell air cleaner, but that was completely ineffective. Indoor air is much more unhealth than outdoor air--by 1,000 times or something like that.

Also, right before I was diagnosed, I had what was essentially a high-powered cell phone under my chair that gave me a different kind
of high-speed internet. This system uses cell phone nodes to give people access to DSL-like internet speeds. That transmitter sat under my chair for more than year. There was some Italian research that showed that lymphoma cells grew likely crazy in the presence of a relatively high powered cell phone.

Finally, I was probably born with an effective immune system. I do not sweat very much. I do not get sick too often. Yet, I had a severe case of acne as a child, long before Accutane. My sister, who is a high school biology teacher, thinks there is probably a link between my acne and the myeloma. I am not so sure.

Also, I have had depression problems, anger inssues, and I have not handled the stress issues of my life very well. I am sure all this has not helped it a lot.

Even none of those things happened, I think I might have developed myeloma, but probably at a much greater age then 44.

Alex Maas
in San Diego

Hi Alex, I just "lost" a long message commenting on your long post. I clicked on Preview Comment, and very stupidly (!) tried to correct a few typos while in the Preview stage, and poof! the message was gone. I didn't keep a copy, either. May this be a warning to everyone! :-)
Ok, let me try to piece together my comments again. Your message brought up a lot of interesting issues.
Concerning the virus-MM connection, I remembered reading (a few years ago) a study by your very own Dr. Berenson on that very topic. In fact, luckily, I printed it out and kept it. It can be found at: http://www.aegis.com/news...
Basically, it establishes the connection between the KSHV herpesvirus and MM.
Now, years ago, when I was in grad school, I tested positive for the Epstein-Barr virus. In fact, I got mono twice. Once in college, once in grad school. I also have had asthma for years, and have always had cortisone inhalers and Ventolin nearby. Until I began curcumin, that is. I am a curcumin-taker, for those who don't know me, but that is another long story. Back to us.
I also have rosacea (it's a form of adult acne, makes me look like a rosy-cheeked adolescent when I get flair-ups, lovely! not!), which I inherited from my father who also has it. So, chronic inflammations and herpes virus. I have often wondered about that connection with my MM. We all know of the cancer-inflammation connection. So, interesting point.
Nutrasweet. I looked at one of my main reference books, i.e. Patrick Quillin's excellent Beating Cancer with Nutrition. He devotes a chapter to the connection between cancer and sugar. (Sorry to say, this connection exists...you see, I am a chocoholic trying to give up sugar, not easy). Anyway, he writes a diatribe against aspartame. Avoid it like the plague, basically. You're better off with white sugar, used on occasion.
One more thing. I am a BIG cat-lover. I was diagnosed with MGUS before my hubby and I got adopted by our three house cats. They for sure did not cause my MM and have not made me any worse. Indeed, their cute little fuzzy faces and presence have helped me through some tough times.
And now, since you told me about the negative effects of my computer (yikes!), I am going to sign off and shut it down!
Thanks Alex, very interesting post.
Margaret,
Florence Italy
(dx with MGUS in 1999 at age 38; now SM with stable disease; only treatment since January 2006: 8 grams of curcumin a day)

Flare-ups, not flair-ups....

(sheepish grin)

Ok for the cat explanation. I didn't mean to sound defensive, but I remember reading a post on another listserv about an MM patient who got rid of an elderly pet when he found out he had MM, at some point during his treatment. I remember feeling total shock. I could never get rid of my cats, no matter what. Yep, I know, I am a BIG cat-lover. However, our cats are HOUSE cats (we have a big house so they have plenty of space). That makes a difference. Big difference. No fleas, no dirt, no outside allergens brought in, etc.
I agree with you re the carpet. In fact, we have very few carpets in our house. Bad for asthma sufferers, as I used to be (in the pre-curcumin era) and as my hubby is right now on occasion.
Sugar. I cut out all sugar for the first few months after my diagnosis, but hey, that was hard! And I don't know if it is the single most important thing to cut out of our diet. Any other thoughts on that? I am also a big pasta-lover, and I know the breakdown means sugar. But pasta, I refuse stubbornly to cut out of my diet!
Like Alex, I also do NOT believe that sugar causes cancer. That seems so silly. If that were true, about 90 % of the world's population would have cancer. Like you, I don't think that sugar or aspartame cause cancer, but they certainly don't help. Patrick Quillin says that sugar feeds cancer. He doesn't say it CAUSES cancer. So, if we cut out the sugar, our cancer cells won't be such happy campers. I rarely use white sugar anymore. Or even brown, sigh.
I also agree with you about Vitamin C. I don't take it, in supplement form, I mean. I do occasionally take a multivitamin and I am sure there is some Vitamin C in it. The other form that you mentioned, is it ascorbyl palmitate? Anyway, my feeling is that if we take lots of Vitamin C, we are just overburdening our kidneys. So, perhaps not a good idea. But I could be wrong. Michael Gearin-Tosh took a lot of Vitamin C. Up to 20 grams (I just checked his book). So, hmmm....Anybody else?
I am glad I have cut sodas out of my diet forever. Especially now that I have read your post! I didn't know that freaky little important fact about benzene.
Thanks, Margaret

I think the C thing is for building the immune system- I'm of the school that says it's toxins- many cite petroleum products but- toxins are stored in fats and milk isn't even something cows drink after a year. Diet IS the key to stopping the continued exosure- reversing is another thing- first getting the immune system to kick back in - Sodas have no good anything in them- discuss this with your kidneys and bladder- I have also noticed since I became Vegan my sugar cravings are reduced, I add chocolate chips 70% dark chocolate to my fruit salads since dark is good or maybe I'm rationalizing. I've given up blaming the society, the workplace etc. for all this and have gone directly to what I am going to do about it. I take responsibility because I didn't live in a cave and eat berries and nuts- Instead- it is what it is and the only control I have is diet and vitamins and alternative medicine since I believe the chemo route destroys my immune system and I want a super strong immune system. Obveously my medical doctors roll their eyes but so far I'm only MGUS.

I used to drink Coke whenever I was travelling. It always seemed safer than drinking water. And, I hate to admit this, but I drank some soda while we were visiting Maine last August. Ginger ale. Still soda. I won't do that again, especially after reading Alex's posts. I just watched a YouTube video (a Channel 7 news report) about sodas and cancer. You can view it at: http://tinyurl.com/yufzkx Did you know that water is the only beverage with safety standards for benzene? I think sodas should be eliminated from our diets. Probably more than anything else (?). I liked Mary's comment about living in a cave eating berries, by the way. Good one! Let your doctors roll their eyes. I personally think you are on the right track. Margaret

I was away last week and am catching up on all of the listserv comments accordingly- I have cut,pasted and responded to specific comments in previous posts.

"I am pretty sure that the cause of myeloma is a general accumulation of toxins throughout a lifetime"

"We all breathe toxins from the air all the time."

Having been dx at 34 after working in a printing plant for the previous 4 years I agree with your assessment, Alex.

"With light chain disease, I just have a hard time drinking the 3 to 5 liters of water I need to drink every day. Water flavored with fruit juice or green tea, I have tried different things."

The place where I work out has filtered water dispensers- in an effort to drink the necessary water I should each day, I drink water before, during and after each workout. I know this system wouldn't work for everyone but I'm offering it as a system that works for me.

"I think sodas should be eliminated from our diets."

Margaret, Alex- I have sworn off all softdrinks after studying the ill effects of sugars/artificial sweeteners and especially after seeing my eight year old son and his friends and what a huge part of life soft drinks have become. They are present everywhere! I hope my son doesn't get some sort of food complex because of my cancer experiences and how they affect how I see the world and how I parent.

PortlandRose-

"Diet IS the key to stopping the continued exosure- reversing is another thing-"

I think that some form of detoxification is an important aspect in reversing our toxic exposure. I did a liver purge several years ago (you wouldn't believe what came out of me!) and I sweat each day exercising and in the sauna after-

David

Hey, David, I did a liver purge, too. And had NO problems. Could it be my Mediterranean diet (I live in Italy, for those of you who don't know me)? I thought I had not done it properly, so I redid it. Same thing. Nothing happened. Weird!
Margaret

Margaret-

I don't know enough about liver purges to offer any quidance here. Up until that point in my life (36 yrs) I had not treated my liver well so it was gratifying to me that lots of pellets came out of my liver.

I was just happy to see that Sherry had pursued one type of detoxification therapy and considered it to be positive. I sauna frequently and consider it an important part of my overall regimen.

David

I am really into detoxing. And I believe it is a practice that successfully brought my m-Protein from 5.5 to .2 and lower. (I find out Monday or Tuesday.) I thought I'd share what I did so as to obtain feedback or maybe, as well, give some of you ideas for detox.

#1 Water: I drank a gallon of water after each session of my initial chemo. After the high-dose chemo before the transplant, I ended up drinking gatorade (even though it's chock full of corn syrup). Couldn't keep anything else down. But water with electrolytes and maybe some unsweetened juice to give it flavor/vitamins is what I drink all day.

#2 Sauna/Hot Baths with salts, etc.: Every day I try to sweat in the sauna or bath.

#3 Coffee Enemas: I have not done this since the high-dose chemo, but before I did a coffee enema daily. If you want to know more about that, there are plenty of places on-line (especially from one Dr. Garcia).

#4 Teas: Green tea, Yogi Peach Detox Tea, Ginger Tea (made from ginger root,) Dandelion--whatever I think I need I drink it instead of other beverages like milk, Coke, etc.

#5 Exercise: This has been hard lately, since I'm still recovering and my energy is low. But I walk outdoors. Before the transplant I walked at least two miles a day. I'm working to get back to that and then surpass it.

#6 Hydrotherapy: there's a foot bath that removes toxins; I get it from a woman here in Dallas. Cost: $30

#7 Breathing, Breathing, Breathing: Relaxation is key for me. I use a tape Andrew Weil made that does guided imagery, if I can't relax enough on my own. Yoga helps in this area, too, as well as Acupuncture.

#8 Fun: whether it's a funny movie, spending time with friends and family, dancing, watching You Tube or American Idol, it works for me to detox with fun.

#9 Prayer: I let go and let God (however cliched that may sound)

#10 Writing: Daily whether in my blog or in some other way; writing and creative expression is detoxifying for me.

I also see detox as a metaphor for how to live life. I purge clutter, negative people, negative thoughts. I don't watch CSI shows or anything even remotely called a "medical drama" since it gives me ideas about other illnesses or traumas I could have. Simplify and be free: that's my mantra.

This is all VERY interesting. Thanks, Sherry! I was particularly struck by what you said about purging negative people. I have come to that realization only recently. For instance, I have friends with someone for about 15 years. Only recently did I realize what a drain (emotionally) this friendship has been on me. Mostly, she used to complain about her problems (which really were not that big), and her psychosomatic illnesses (nothing was ever found wrong with her, even after she had a zillion tests of all sorts). In the past few years I have found it increasingly difficult to listen to her. I have become, I guess, intolerant. Is it because of age or cancer? I don't know. At any rate, about 2 weeks ago, while we were on the phone, I cut her off abruptly, using an excuse, and haven't heard from her since. It's been a big relief, to be quite honest. Yes, I occasionally feel guilty, after all, I am not a meanie. But I think you are right about eliminating negativity. Negativity drains us of the energy we need to fight MM or SM or MGUS. That's what I have come to believe, anyway. Like you, I also try to purge negative thoughts, and am usually quite successful. I simply distract myself immediately. I just bought a book on yoga and breathing, and am going to begin some of blood and lung cleansing breathing exercises (yeah, Old Bill!), in addition to resuming qigong. There is a lot of material in Sherry's post for discussion, but I have gone on way too long, and probably over-killed my point, sorry. :-) Margaret

Margaret--I recently had a terrible encounter with two in-laws. There was a huge family wedding in Austin that was to occur right around the time I'd completed the stem cell transplant. I knew I wouldn't be able to attend since I was supposed to avoid crowds, but I was well enough to go to Austin (one of my favorite places on earth and not far away from MD Anderson.) My doctors said I could, at least, go to Austin, so I called the family to announce my joy. Though they'd been inviting me for months to be as involved as I could be in the wedding, suddenly I was banned even from coming to Austin! I might create "drama" that would pull attention away from the bride just by being in town. This kind of weirdness had happened before with these in-laws, but I'd always brushed it off. Not this time. I went to Austin anyway and was able to confront them on the phone and in a letter about a week later. The week of the wedding, I was so mad, I couldn't sleep for three nights (which was bad for me since I was still recovering.) But I stood up for myself and decided it was time to let these "negative" people go. They are, of course, family, so they'll always be in my life in some way. But that doesn't mean I have to trust them. This was a huge notion I learned (or remembered) that continues to help me. I knew, almost from the beginning, that standing up for myself was a big part of healing this cancer. That's because, I, too, am not a "meanie," as you say.

David--While at MD Anderson for the SCT, I threw up for 2 days straight. Nothing they could give me would work to curb the vomiting without also giving me a migraine (which, in turn, made me vomit, etc.) I was encouraged to give up on water for hydration and drink only Gatorade, which has electrolytes in it. Electrolytes are, I think, potassium and magnesium. They also gave me an IV of potassium when it was low in my blood work. I believe potassium and magnesium are very important. My legs were stiff and ached relentlessly when I was low in those two elements, then returned to normal after supplementation by IV and Gatorade. Now, I do not drink Gatorade, but search for drinks without high fructose corn syrup that have electrolytes. My doctor recommended tomato juice, which I can drink without stomach trouble. Smart water apparently has electrolytes, but I'm curious if anyone else has found a better source. Or if I'm wrong about electrolytes having anything to do with potassium and magnesium, please advise.

Electrolytes (sodium, potassium and magnesium) are really important to our health. A person with really low electrolytes can die very quickly. I once had to make an unscheduled stop at the ER because of low electrolytes. (I had been on a two-week juice fast + daily coffee enemas. Our electrolytes reside in our intestines, so we have to replenish electrolytes after enemas, too.) I'm now very aware of my electrolyte levels and replenish them regularly. I take E-lyte, an electrolyte product that doesn't contain sugar. See:

http://www.elytesport.com...

For those who are using a sauna for detoxification, it's important to replenish electrolytes during and after a sauna, too.

If your legs cramp at night, this could be due to low magnesium levels in your muscles. Remember that your heart is also a muscle that needs adequate amounts of magnesium. If your heart starts cramping, does that mean that you're having a heart attack? I've never had that happen, but my legs have cramped, and it is not something I want to have happen again. I'll continue to play it safe by taking electrolytes daily.

Cathy

Cathy-

I happened to read about calcium/magnesium deficiencies recently due to exercise and sweating (saunas) so I began to supplement accordingly. Yes, my legs were cramping and my heart was occasionally jumping around.

My question Cathy is this increase in my cal/mag intake daily enough? Are electrolytes somehow different? How do you measure your electrolyte levels?

David

Hi everyone - this seems like the perfect forum to ask this question: Does anyone else, besides my husband, suffer from onychomycosis - it's the persistent nail fungus. He's had it on his 2 big toes for about 15 years - it's impossible to eradicate with topical methods. In the past, we have not considered taking the perscription Lamisil, because of the possible liver damage as a side effect. However, someone in a complementary field, mentioned that this could be a cause of mm. I could not turn up any correlation in any research that I've done since Jerry's been diagnosed on 1/11/07. How ironic now, when we think of the side effects of the conventional meds he's currently on(thal/dex).
Claire

As a matter of fact, my husband, newly diagnosed in early March, has had a fungus on his big toenail for as long as I've known him (decades). He told me that doctors told him the only way to get rid of it was systemic antibiotics for about a year, and that never seemed worth it (he's anti-med, didn't even use to take Tyelonol before MM hit us like an 18-wheeler run away truck). I read one other place that a toenail fungus could be linked to MM but can't now remember where.

Oh, how I wish I had explored this years ago. But you know, we just thought it was unsightly but not really a big deal.And certainly not worth taking antibiotics for. Yes, ironic.

But you know what is really interesting? His toe nail fungus is GETTING BETTER for the first time in decades. How odd. We don't know if it is the massive amounts of antibiotics he had to take after his two surgeries and the staph infection he picked up, whether it is the thal and dex, or whether it is the Gerson diet. But, there is no doubt about it: his fungus is improving.

Lisa

Hi Lisa - I do hope we will hear from other MMers who may have similar stubborn nail fungus situations. Wouldn't it be interesting if we have "stumbled" onto something as this fungus being related as a possible cause of MM?!? We live in San Diego County, how about you?
My husband has had other issues that seem to have improved on the dex. However, he also had major leg weakness and for this last month, his onc has recommended he be on dex for 4 days and off for 28. His regular dose has been 40 mg 4 days on/4 days off; thal 200 mg every day since Jan. 20, 2007. He goes in on May 1 for his next lab work to see how his numbers look. We have Kaiser Permanente as our health provider.
Thanks for your response above! Claire

Hi Lisa - I do hope we will hear from other MMers who may have similar stubborn nail fungus situations. Wouldn't it be interesting if we have "stumbled" onto something as this fungus being related as a possible cause of MM?!? We live in San Diego County, how about you?
My husband has had other issues that seem to have improved on the dex. However, he also had major leg weakness and for this last month, his onc has recommended he be on dex for 4 days and off for 28. His regular dose has been 40 mg 4 days on/4 days off; thal 200 mg every day since Jan. 20, 2007. He goes in on May 1 for his next lab work to see how his numbers look. We have Kaiser Permanente as our health provider.
Thanks for your response above! Claire

My husband doesn't have MM but he has had a nail fungus. His doc did not want to give him meds because of the side effects. My husband has a heart condition and the added stress of being my caregiver. I read about using Vicks vapor rub in the newspaper and thought "What can it hurt?" We tried it and it works. It does take time, three or four months, but it's cheap and no side effects. I also read that Listerine works, it is antifungal. We did not try that. We have to take so many meds and it is good to find some old fashined remedy.
This is my first post, too.
Janet

Hello Claire, thanks for the post. I live in Cyprus, pretty far from Sand Diego! :-) But, I once visited your zoo, many eons ago! About the fungus, we're going to watch and see what happens. If the improvement was from the antiobiotics, it should stabilize. If it is from the diet or from the Thal or Dex, it might continue to get better. My husband is on 200 mg of Thal, and he started with pulsed dex (40 mg 4 days on, 4 days off) the first month, then a break of a few weeks, and this month he'll have one block of four days only. We are hoping that the cancer numbers at next visit will give us leeway to ask the oncologist to reduce the Thal. My husband complains of a feeling of plasticity in the face, and at first he had slight numbness in his fingertips but he says that is better now. Anyone else ever experienced plasticity/numbness in the face from Thal? Our oncologist dismissed the symptom (first tried to suggest we must be taking some herb without permission to cause it!) and so far is not willing to reduce the dose of Thal. I've started giving my husband B complex as well as B 12; i also read that B3 can help (and that is an important vitamin in Gerson) but you have to be careful about taking B3 while taking Dex or any other steroid. Even vitamins can have drug interactions, I"ve learned.

This is most likely a symptom and not a cause of myeloma. However, it may also be a symptom of MGUS and smoldering myeloma. Walter Graves posted an article on the mm ACOR list about a kind dermatosis that happens to us ligh chain patients. In this case, it is not a fungus at all but something that happens to a lot of light chain patients. It is very similar to psoriasis. I thought it was athlet's foot, then scabies. Yet it never went away. And when I read that article--I knew what it was after many years of trying to get rid of it.

I would guess that the nail fungus is similar in affecting mm patients with their immune systems gone awry.

Thanks.

Alex

With all this talk about nail fungus, I had to check. I don't have it, but I did want to report that curcumin is antifungal, antibacterial and antiseptic. Quite strongly so, apparently. Not sure how you would apply it, though. I know that in India poultices made with turmeric are applied to sprains and cuts and so on. But then your toes might turn a bit yellow. Just a thought.
Margaret

I don't have nail fungus- but I would think the problem with getting rid of it is a compromised immune system. I have 2 friends that got rid of it (don't have MM or MGUS) with tee tree oil on a cotton ball in their shoes for 3 months. Just a thought.

Hi and thank you so much to all who responded to this topic. From what I am gathering from your posts, it seems that it's impossible to draw the conclusion that everyone who has MM may have the nail fungus. PORTLAND ROSE, My husband has tried tea tree oil, to no avail. JANET, We did read about a month ago about the Vicks (he rolled his eyes at that one); further research (needless to say via good ol google!) clarified that his condition was too advanced for the Vicks method. If a SCT is in Jerry's future, I would be very concerned that this fungus could be exacerbated or lead to other fungal infections during recovery. ALEX, thanks for your thought about the nf being a symptom of a compromised immune system. Who knows how long Jerry may have had MGUS or SM before his dx in Jan. 07. Also, I will be at our May 14 MM support group to hear Dr. Berenson speak...I'll be looking for your nametag! MARGARET, Jerry's involved toes are already yellow - but I know you've had good luck with the curcumin...I've been adding curry, garam masala to foods lately as a start. Claire

Clair Burns and everyone else-

Who would have thought that this topic would create a string with 10 posts in the past three days. I guess the lesson here is that this listserv is as much about the immune system as it is about myeloma.

Here are some suggestions from "perscription for nutritional healing" by James and Phyllis Balch.

1) Acidophilus
2) Garlic
3)Aerobic 7 from Aerobic Life (?)
4) B complex, C with bioflavenoids, E, zinc
5) Herbs- tea tree oil several times a day, 3 cups of pau d'arco tea daily
6) soak mails in a mixture of pau d'arco and goldenseal-
much more in this book-

David

All-

This 10 post strong nail fungus string has inspired me to write a general update about the b-m.org listserv.

As many of you know, this listserv is only about a month old. The site's membership list has jumped from about 80 a month ago to about 160 today. The hits to the site have grown exponentially over the past few months. 160 members means that the list/site is still in it infancy but doubling membership in a month's time is terrific. The more who contribute the more each of us benefit.

Thanks to everyone and keep asking any and all questions!

David, this is excellent news. I would like to take the opportunity to thank you for having had the listserv idea and commend you for having gone through with it. It is so important for those of us doing alternative/complementary treatments to have a place where we can exchange ideas etc. Thank you!
Margaret

I would use this info

I really can't say whether it is the Gerson diet or not (maybe the curcumin is now helping as well) but my husband's nail fungus, which not only was really bad on one big toe nail, but which had partly affected the toe next to it and partly affected the other big toe, has mostly disappeared from the smaller toe, totally disappeared from the other big toe nail, and has improved by about 50% on the big toe nail that was severely affected.

Lisa-

I am happy to see the return of posting about toe nail fungus! Seriously, I am- all I can say about this is that it sounds to me as though your husband's immune system is getting stronger. I wonder if there is any correlation between your busband's fungus and mm levels?

David

David, I don't know but that is my guess and my great hope - that his immune system is getting stronger, and that there is a correlation with MM levels. The latest blood tests look good - his IgA protein has dropped significantly,his Beta2 has dropped, his hemoglobin just keeps on rising (up to 13.3 now). We are keeping our fingers crossed. It makes the labor of the Gerson diet seem worth it.

While reading Mother Earth News yesterday I came across an ad for a product called "nail fungus soak." It is sold by an outfit called "longcreekherbs.com." I know nothing about this product, I cannot speak for it worth. I am posting this info because several of the list members were curious about the subject.

David

sunnylady1
Sorry David about not getting back to you sooner; and still have not got my papers together to share with you my numbers, specific diagnosis, light chain characteristics, etc. I continue to be extremely busy; will be leaving for California to visit my daughter and grandson until the first couple of weeks in July; will actually be doing child care for awhile; so have been working on making sure I take all my supplements, do my exercise, get all of my business lined up, etc. On the way, I will be stopping at the Burzynski Clinic for a day for my regular 3-4 month appointment. My insurance is paying for it, by the way. Today I'm getting a massage, stopping by my lab for lab work, shopping for the trip, the bank, you know , just routine things, but they do keep me going.
Again, just for review, I was diagnosed with multiple myeloma/non-Hodgkins lymphoma small cell in July 2003; began at the clinic in September 2003 as a result of reading the article in the Whitaker Wellness Newsletter which I had received about 4 years before. I had been totally involved in complementary/integrative health care approaches since the early 70's, a runner, worked out. I'm not too modest to say that in my 50's, people thought I was in my early 30's. Healthy, I was,(and actually am) so, but worked under a lot of stress as a professor, program director at my university where I had been for 30 years (by the time I retired), am now, 69, and people still say I look like I'm in my 40's. I have not really been sick, although my enegy level has been lower than it had been when I was doing all the running, exercise, etc. But not all the time. I am still a pretty energetic person. I still walk and work out, lots of equipment at home, and am considering putting an infrared sauna in my basement. I take lots of supplements, though for years before my diagnosis, was on the Whitaker 2 packs a day regimen, alternating with the Dr. David Williams, 2 packs a day regimen, and sometimes, just adding other things I uncovered through investigation. I have cabinets full of supplements and shelves of books and articles collected over the years. In fact, colleagues at the university used to come to me with questions about what to take for health issues, so I guess my hobby turned into something pretty useful at times for me and others. But it didn't keep me from developing mm. I do believe my building was toxic. We had a lot of people develop cancer and heart conditions...who knows? If I remember correctly I have IgE light chain type. I had a bone marrow biopsy as part of an extensive diagnostic workup, since then have had one more which revealed continued presence of too many cancer cells. So, I am not in remission, but pretty stable. My total protein level gradually went back up from within the normal range to high. It has varied from 8.6 to a current level of 9 during the past 1 and 1/2 year.
Everything else is within normal limits. I drink tons of filtered, UV, RO water from my health food store daily, make my own organic fruit smoothies, pick up fresh organic veggie juice freshly made at the HFS, eat as much fruit and vegetables as I can, take flax oil, sometimes grind my own flax seeds, take liquid, vegetable based iron (Floravital) twice daily; have taken AHCC and a couple of other supplements considered strong cancer fighters, i.e. essiac (will get more info to you on those later). I am trying something new now, Ave, known in Europe as Ave Maria. You can get info on it on the net. It has a lot of manganese in it, known to be helpful in metabolizing sugar. I also take chromium picolinate, Citrimax, and at times gymnena sylvestre, all known to be helpful in metabolizing sugar, normalizing the insulin response. I do a lot of mental/spiritual work. It really does help. I take liquid sodium phenolbutyrate, 40 mls, 4x daily, 3 AminoCare (amino acid complex developed at the clinic), 4x daily. I also take plant based hormones on my own from the Women's International Pharmacy, a compounding pharmacy in Madison, WI, along with a diuretic, which I am cutting back on and substituting Vit. C and B6 which time released or divided amounts, works pretty well as a natural diuretic. I don't take any herbal diuretics now, but may switch over at some point. I take minerals, iron, sometimes multiple vitamins, and sometimes take what I feel I need (not very scientific I know); but it somes to work pretty well for me. Oh, I began taking standardized full spectrum Turmeric for about a month and a half. Well, I have to go now. I will try to get you some more specific numbers later. Sorry about the delay.

No problem with the delay- it sounds like you are doing fun things-

But you do write many interesting things-
1) "My insurance is paying for it,
by the way- I talk to people all the time about antineoplastong therapy- the cost of it, insurance, etc.- how did you get coverage? Can you explain how/why your insurance carrier is paying for your antineoplaston therapy?

2) What other lab work? MM diagnostic testing? What tests?

Thanks for the post- can you relay your specific antineoplaston regimen? Cost, insurance, etc.

David

sunnylady1 David, Unfortunately, I spent about an hour putting together a detailed response for you, and my computer crashed, Uggghhhh! Will have to get back to it, maybe not until I get settled in California, where I'll be for several weeks. Maybe I can locate it, will see. sunnylady

sunnylady1-Looks like I must have done the same thing Margaret did awhile ago! She warned us..I should have been more attentive!:-)

sunnylady1-

No rush. Though I am interested in your regimine, I don't want you to hurry- California sounds important to focus on right now. We will talk when you get the time. thanks

David

THIS IS MY FIRST POST, THANKS TO DAVID FOR SENDING ME IN THIS DIRECTION. I HAVE MM, SINCE MAYBE LAST JULY(O7), IT TOOK A LONG TIME TO DECIDE THAT IT WASN'T MGUS. I  NEVER WOULD HAVE THOUGHT ABOUT NAIL FUNGUS BEING INVOLVED IN THIS MM STUFF, UNTIL I READ SOME OF YOUR POSTINGS. I HAVE IT ON MY THUMB NAIL. IT FIRST CAME ON, WHEN WATCHING T.V. ONE NIGHT, IT SORT OF HURT, I LOOKED AT IT AND IT WAS BUBBLING UP RIGHT IN FRONT OF MY EYES, UNDER THE NAIL NEAR THE MOON. IT LASTED ONE DAY, HURT STOPPED  AND I REALLY DIDN'T THINK MUCH ABOUT AGAIN. THEN IT HAPPENED2 TIMES AGAIN. WHEN I WENT TO MY ONOC. HE JUST SAID IT WAS A FUNGUS AND TO SPRAY WITH LAMISIL. I THINK THE NAIL IS HEALING, NOT GROWING, BUT NOT RED OR WHITE UNDERNEATH. I AM NOT ON ANY KIND OF TREATMENT, STUBORN. I AM TAKING TONS OF VITAMINS AND GREEN TEA TILL I FLOAT, BUT SOMETHING SEEMS TO BE WORKING, MY BLOOD IS BACK TO NORMAL, MY PROTEIN AND BREAST MARKER WERE UP A LITTL LAST TIME, OCTOBER, HE DOESN'T WANT TO SEE ME UNTIL FEB. I THINK HE REALLY DISLIKES ME BECAUSE I AM DOING IT MY WAY, THANKS TO ALL YOUR POSTING AND CANCERCOMPASS.COM. OH, BY THE WAY, FOR YOU FOLKS THAT ARE HAVING LEG CRAMPS, I HAVE A LITTLE VOO DOO, PUT A BAR OF SOAP BETWEEN YOUR SHEETS IN BED, NOT ANY FANCY SOAP,NO DOVE OR DEODORENT, WORKS MOST OF THE TIME OR AT LEAST HELPS.  SUE